Many people, health professionals included, make the mistake in thinking that fatigue is just another word for tiredness. It isn't. Fatigue is so much more than that. Tiredness is what people feel at the end of a day, or after a period of strenuous activity, either mentally or through physical exertion. Fatigue is where stamina plummets off the edge of a cliff after doing something unremarkable.

As prayer is so much more than thinking a wish list, fatigue is so much more than feeling tired.  

Fatigue is the inability to think logically, coherently or safely. Being tired is weariness. Fatigue is finding it impossible to stand or walk safely, being tired is wanting to sit down.

I have less tolerance and appetite for socialising than I did. Part of this is because I get easily annoyed, partly because I'm far less tolerant of others than I was of others opinions (especially if they are pompous), partly from the frustration of having trouble word finding, partly because I actually don't really care that much about other opinions and can't say I really care about many of my own so why bother soapbox them, and also because socialising is just SO exhausting.  I'm lucky that the few people with whom I do choose to spend time, and who I trust are those who understand my disability. 

I've noticed that I have much less compassion and empathy than before I had DS. I used to be able to feel things for others that I can't feel now. I used to be a Samaritan, but I could no more empathise with someone than know how to spot a Kenyan among a crowd of Nigerians.

People who don't have DS have a "social brake" that stops them from saying things that are offensive even though they may be funny, but people with DS lose that brake. We say things that may be racist, offensive, gross, inflammatory, things that could with ease generate a violent or angry reaction from others. But we can't help it. We think something and we say it. We don't, we CAN'T, stop ourselves from saying things just because someone would be upset, because we don't have the mechanism to stop saying them.

Memory is really unreliable with DS, so much so I can't trust what I remember, so what I remember may be a recollection of a fact, but it may equally be a confabulation made up of a variety of things that did happen, and a mix of things I think happened, thought would happen, and what happened somewhere else at a different time for a different reason with different people.  

It takes ages, with Dysexecutive Syndrome, to engage with what we find difficult tasks, but are just routine things for everyone else. Paying bills, getting through life, dealing with officialdom, these are all huge obstacles because they rely on being able to concentrate on them.  However, once we can get stuck in, we can't easily disengage from them. Getting engaged with a task is a problem, then there is the problem of fighting distractions, but once we are engaged we can't break free from them to deal with more important things. 

I was once referred to a memory clinic.  The only problem with memory clinics is that they try and teach strategies to how to improve memory, but these strategies involve being able to remember the strategies in the first place. People who run memory clinics that try and impart strategies to improve memory don't understand memory loss, and need to come up with strategies that don't involve having to remember strategies.

My short term memory is awful. I could meet someone we both know really well in town and they might tell me something very significant and important, like their husband, father, dog has died. I would make all the right noises but within five minutes of walking away from them the memory of that conversation has gone. So often my wife has later met someone and said "why didn't you tell me X? I felt such a fool when they expected me to know Y, but they said they told you weeks ago". 

I'm often distracted and unobservant. I can get to the pedestrian crossing and notice a red illuminated sign, but have confused the fact that I'm crossing traffic with the impression that the red illuminated sign means that traffic has a red light against it, whereas the sign is actually informing me that it's unsafe to cross. I only notice my mistake when either the person I'm with has waited on the other side of the road, or by the sound of annoyed drivers hooting their car horns.

I really really find it hard to manage post. Envelopes lie unopened for months in piles as I simply can't get my head around opening them. I need a clear head, and I don't ever have a clergies head for months. I'm scared of the consequences of opening the post and having to make decisions for which I haven't the capacity to do so.

I knew within weeks of discharge, having been in hospital for 6 weeks, two of which were sedated and intubated in Intensive Care, that something was different, something was wrong. That November, a few months after discharge, we had put up a Do Not Trick Or Treat notice on the door, but there was a knock at the door and a group of small children had decided to ignore the sign.  I flew into a rage, burst open the door holding an axe in my hand that I'd picked up from the fireplace, and swore and shouted.  They all ran off. This was totally out of character. This wasn't me, or up till then it wasn't.  I had no idea what was happening, but I knew it wasn't good.